Why I Hate Breaking in New Doctors

A memory is a winning strategy. Like human sacrifice.I could title this all kinds of different things, like Why the US Healthcare System Fails People with Chronic Illness, or Please Will More Doctors be Honest with their Patients. Or something about how chronic illnesses and mental illnesses together make doctors afraid of you.

I saw a new psychiatrist today. I haven’t seen a psychiatrist in over a decade, partly because of all the other doctors I see or have seen. I mention that because I’ve gone through what feels like a thousand new patient appointments with new doctors. Lately they all go pretty much the same. If I’m lucky they’ll have a tidbit of insight or confirm something and agree with someone else. I’ve had good and bad experiences with new doctors. You can feel anywhere from validated to broken.

It’s probably worth noting that when I fill out the paperwork that doctors request their new patients fill out, I include my own lists for my medication, health history (or diagnoses), and allergies. The preferred (better) response to this is appreciate for the clear and thorough information. The not preferred response is shock and awe.

As you probably guessed, the doctor I saw today was shocked and in awe. Her eyes widened at least three times. She couldn’t believe my list of allergies or medicines, and stumbled over my medical history. I think her jaw dropped once? More than once she asked a question that would be answered by reading 6 to 10 more words of the paperwork she was already reading. She picked out the medicine she doesn’t prescribe because it’s “very old” as well as commenting how I’m on “so many” sedating medications. (I don’t think she read the word “as needed”.) She commented on my xanax prescription, probably because she doesn’t prescribe it, but offered no alternatives.

All of this happened while she was firing questions at me. She moved quickly but didn’t specifically rush me. She was very nice but also clearly overwhelmed. She was even surprised at the number of doctors I have – which shouldn’t be a surprise in the US healthcare system after you see the number of diagnoses a person has received. She also assumed I wanted more medicine since she told me that considering the medicines I’m already on, she doesn’t want to give me more medicines. (If I had a nickel for every time…..)

And one I haven’t heard before….   she didn’t want to get in the way of any of my other doctors. Psychiatry is very specific the last time I checked, if she’s willing to send records to other doctors then she’s working with them, not interfering.

Probably the most interesting? successful? useful? part of the entire experience? Within 5 minutes of talking to me and looking at my paperwork, she asked if I was ever diagnosed with Borderline Personality Disorder. This means that I’ve had a doctor at Mayo Clinic, psychological testing, and a random psychiatrist all have the same “opinion” – that I do have Borderline Personality Disorder. But no one wants to make recommendations on medications.

She had very little to say about the problems I described with my memory, including lost time, and how through working with my new therapist I’ve come to learn I probably/likely/definitely have PTSD.

She clearly felt I was beyond her capabilities but never actually said this. Really good doctors say this! Great doctors explain why!

In fact, I even felt like she wanted to run away. As she was leading me back out of her office towards the front desk she was walking fast enough to disappear behind the turns in the hall. I’m accustomed to people waiting for you or giving you directions. Logically I know that this was probably the way my brain interpreted the situation – and probably not what happened – but I still feel like subconsciously she was trying to get rid of me/get away from me. It’s super weird to hold both those thoughts at the same time.

No, I’m not expecting a new doctor to have answers –  but the more people involved in a problem, the more likely you are of finding some kind of help. If you can’t help me, refer me to another doctor, please! Or if you aren’t sure how you can help, tell me. This appointment wasn’t bad or terrible, but it wasn’t productive or pleasant either.

Ultimately, she referred me to another place to receive this thing called TMS that’s supposed to help treat depression. I have an appointment tomorrow for a “cost free consult” so we’ll see. Not holding my breath. Insurance, time, and money all figure in.

I’ll need to try another psychiatrist but it’ll likely be a few weeks. Finding a new psychiatrist is difficult on my mental health. Especially with my other doctor appointments and trying to build a relationship with a new therapist. The first psychiatrist I tried never returned  my calls (2 left over 3 days with a message that calls are returned same business day!). So I guess this was a slight improvement. Maybe the third try will be a success.

*image courtesy of inspiro bot. Seemed appropriate based on the various blank spots of various sizes that I have in my memory.

Why we can’t have nice things: Fear and Mental Illness

I started writing this post back in June. Why didn’t I publish it? —

I don’t have the ‘official’ diagnosis for BPD or borderline personality disorder yet. However, from what little I’ve read it explains so much. More things keep ‘clicking’ and if I don’t end up with this diagnosis I’ll be asking the doctor what looks like BPD but isn’t.

Recently, I read this from Psychology Today. It’s about people with BPD fearing what their emotions will do. The article says it better. Then things just clicked. HOLY Fucking SHIT I keep getting answers. This article even potentially explains what happened when my physical health became worse.

I live in fear and I feel like very little is under my control.

Fear that something bad is going to happen. Fear that someone is going to think something bad of me. Fear that something bad is going to happen to a person close to me. Fear that I will upset someone. Fear I will overreact to something small and mundane and not be able to calm down. Fear that something physically is going to happen to me when I’m not at home and I won’t be prepared – like a sudden migraine or an allergic reaction. Fear of getting lost. Fear of what will happen if I end up upset and can’t control it and end up more upset. Fear of losing friends if they _____. Fear of harassment on the Internet. Fear of having to wait 30 minutes or more for a doctor appointment. Some of these fears I’ve been able to logically move past. Some of these fears I think I cope with by just not feeling.

I didn’t realize it was fear until after all my testing for personality disorders and after reading that article. This explains why I find compartmentalizing my emotions so dangerous. If I ‘save it up’ to feel later it will be so much worse, especially because I’m afraid of what will happen. And I’ll forget about it, until it comes back, like because something has triggered an emotion or memory.

Rereading this, most of it seems ridiculous. I’m not actively fearing for my life. I live in a relatively safe area. I isolate myself quite often and literally have less of a chance of being in a dangerous situation. But mental illness is ridiculous. Mental illness is illogical. It’s difficult. I’m going to go out on the metaphorical limb here and assume I was afraid to make these words public, despite the fact that in terms of the Internet in 2018 my blog basically doesn’t exist. Again, mental illness doesn’t make sense.

More logically, I didn’t post this because I’m still waiting to hear back from the doctor in charge of looking at all the testing I did for personality disorders. The initial information I received in early July is that I have depression and anxiety. That’s it. There was something about not exhibiting behavior for BPD. I still have so many questions. But that doesn’t explain so many things. I’ve realized a good chunk of my daily behavior is impulsive. From stress eating almost daily to suddenly getting up in the middle of a TV show because I decided to do something else like go play a game on my computer to deciding to clean out the closet. My impulsive behavior is collecting hundreds of kindle samples and thousands of knitting patterns. Or starting 8 different books before I decide to actually read one. Deciding I need a new pair of shoes today. Then there’s the mood swings and the times where I don’t remember what I did all day, even when I try. It’s not like when you can’t remember what you ate for dinner last night. It’s because there’s a dark hole in my mind instead of memories. I fear something happening that will remind me of a bad experience and then my emotions will stir up – like a sudden summer storm that might spawn a tornado.

And leaving the house. Oh. Leaving the house and being around people is exhausting. Conversations have so many rules to follow. Small talk is tedious. Avoiding people is easier. Driving somewhere is stressful. You can’t trust drivers around you. Most people drive distracted. If I get cut off or something else sudden happens I could spend hours shaking from the jump in my heart rate. Then there’s the physical problems like making sure I have snacks because it’s so hard to find something safe to eat outside of the house. It’s so much easier to stay home, inside, away from everything. Besides, home has netflix and our cats and a supply of chocolate.

Because of my health and my anxiety, I spend all day trying to keep my thoughts, emotions, and impulses under control. I can’t go shopping because I don’t have a job and we have a mortgage. I can’t just go for a walk because it’s summer in Texas and my body doesn’t tolerate heat over like 77 degrees (F). I can’t spend hours in the kitchen baking because I won’t be able to do anything after I’m done – and I don’t know if I’ll be able to clean up everything before it’s time for dinner. I’m jealous of people who can drink alcohol and eat whatever they want. I’ve started to impulsively “break” my diet. I’m gluten intolerant and it clearly still causes problems but I’ve started eating foods with gluten again. Thankfully I’ve been on a high dose of a mood stabilizer for years. I still have mood swings. I’m afraid of the mood swings now. Or something triggering me into feeling overwhelmed by emotion. I’m afraid because every time something happens that’s difficult, it’s harder to calm down afterwards. Harder and harder. And the migraines. Because some things are better I can see how stress triggers the migraines. Last time I had a migraine I lost 5 days. I don’t remember what I did.

I suspect? Assume? I fear?  Probably fear. That when I finally hear back from the doctor who is in charge of the neuro-psychological testing I completed in the end of June and being of July he’s going to tell me I don’t have BPD at the current time because I don’t have the extreme behavior – because I limit and control myself via anxiety and fear. And then that means I’ll have mental illness symptoms that doctors can’t explain on top of my long list of physical symptoms that doctors cannot explain when all I want is help to straighten out my mental health so that maybe just maybe my physical symptoms will calm down too. I’m afraid this doctor does not truly understand what living with chronic illness and chronic pain means.

*scrolls back up*

So I guess I didn’t publish that post because I knew I had a lot more to say and I didn’t want to face it. (And if you read the entirety of this blog post hopefully it wasn’t as painful as I imagine it to be. You deserve a cookie, or a strong drink, or some ice cream. (Also, I’m afraid to reread this for edits or I might not publish it.))

My mind is a place I don’t want to be and I don’t know what to do about it. I think that means I don’t know who I am either. 

And not remembering how I feel at home when I can’t bear to leave the house when I do actually leave the house to see doctors isn’t helping.


Image courtesy of Inspiro bot. If you aren’t familiar, you should be. https://www.instagram.com/inspirobot.me/ or http://inspirobot.me/

My Mayo Clinic Experience

I’d like to record something about my experience at Mayo Clinic in Rochester Minnesota  in May 2018, but I’m not sure how to go about it yet. I was there 7 days total counting arrival and departure days. It cost over $1500. I was referred by one of my doctors. It appeared to be impossible to get in on my own. I tried.

If you don’t count learning how my mind and body reacts to being made to deal with mental and physical stress outside of its safe environment (is that really productive?) — I had a solitary productive appointment while I was there.

I didn’t have the time or energy to really explore the area and appreciate the small museum quality displays throughout the main building on the Mayo campus.

If I were to sum up the experience, it was completely misleading and I never would have traveled with just one guaranteed appointment. Mayo Clinic does nothing to welcome or introduce patients to their services. I also recommend no one with chronic illnesses goes to the Mayo Clinic in Rochester, MN.

I’m still deciding if I should go into detail about the experience.

Reader, would you like me to share?

The yeast is coming back

For my records, an attempt to stay in control of my brain, and anyone who wants to follow my super exciting life:

My last infusion was August 30, 2017 and yesterday afternoon – September 3, 2017 – symptoms started coming back. Took about 4 days. Last night my fitbit showed less than 10 minutes of deep sleep. I’ve been up to go to the bathroom 5 times in 3 hours? I did eat/drink a few things high in sugar but I didn’t do anything *crazy* …. I wonder if I can manage diflucan despite the red 40 since I managed the mycamine despite the histamine reaction. Clearly the 3 weeks of antifungal infusions were step 1. There’s no other option I can think of and live with at the moment. I’m going to double both my probiotics. I remembered last night when laying awake wishing I could sleep that my doctor recommended increasing the Prescript-Assist probiotics. I also made the connection that the problems I started having after 2-3 weeks of new probiotics was die off. I discovered the term for die off is Herxheimer reaction. I’ve also learned there exists a powder for suspension form of diflucan.

Returning symptoms:

  1. neuropathy
  2. back pain
  3. abdominal pain, bloating, constipation
  4. bladder pain/etc.
  5. insomnia
  6. anxiety and depression (worsened by the insomnia of course)
  7. eye pain (WTF on top of WTF)
  8. oral thrush – coating roof of my mouth too
  9. yeast residue in my belly button (You know because it’s white, pasty and smells sour.)
  10. hot flashes and night sweats, flushing yesterday was probably related too
  11. loss of appetite

I have no idea if any of these symptoms are also Herxheimer reaction but I know I’ve definitely got yeast symptoms. I desperately need to know what’s going on. So I’ll be doubling both of my probiotics today, possibly taking one reglan per day for a while, calling my doctor tomorrow and hopefully not crying, and hope this tension headache doesn’t get worse. I just don’t have the words.

Systemic fungal overgrowth is real

Specifically it’s candida. It’s so much more than a “yeast infection.” I just finished once daily 100 mg mycamine (mifungin) infusions. I did this for three weeks via a PICC line. The last week really did the trick. After two weeks I felt like I was 75% or so there. I compared it to being most of the way through your antibiotics course for an infection. Previously, I was almost permanently fighting oral thrush and the visible thrush symptoms would clear up but multiple symptoms with my throat never would. Finally, I insisted and my immunologist did a throat culture – for fungal. It came back in a week for candida. It really was everywhere. I can’t even imagine the stress this was putting on my gastrointestinal tract.

Side note, getting information on candida overgrowth (on the Internet) is maddening because people have such strong opinions about it.  It also might be worth noting there are multiple antifungal oral options. There was something about every single option – either the active ingredient or an inactive ingredient – that meant it wasn’t possible for me. If you’re looking for information I would recommend limiting your searching to Google Scholar. You might call this post a follow up to my previous post about looking for information on fungal overgrowth. I’m also not particularly high risk, like organ transplant or HIV.

Because of the symptoms that have utterly disappeared after the three weeks of infusions, I can say unequivocally that I’ve had this problem for years. It increased in severity in the past 9-12 months. Based on my research, it’s possible that just having multiple sclerosis increased my risk. (No idea how, but I saw more than one academic journal article mentioning it.) Gastroparesis also increases your risk, but this makes sense considering that food sits longer and has more time to basically ferment in your system. Also, eating gluten free and drinking more milk doesn’t help because there’s more sugars to feed the yeast. I suspect MCAS increased my risk too.

Also, to be clear. This is completely amazing to me. Dealing with the PICC line, the infusions, and the systemic symptom blow up from the mycamine itself – because it caused a mast cell flare up – was ultimately worth it. On top of this I can’t put into words how astounded I am that I dealt with this for so long and this candida was just ON ME AND IN ME AND EVERYWHERE.

So, my symptoms. I think a list might be easiest. Most of these symptoms have disappeared. Yes, I’ll say it again, disappeared. Just my skin alone feels better.

External

1. Itchiness. My scalp would get unbearably itchy if I didn’t wash my hair at least every 2 to 3 days. A thousand times worse if I sweated a lot. My entire body would be itchy if I didn’t shower every 2 days at minimum. I had accepted that my skin was so sensitive to everything that I just needed to shower every night as often as possible. I know this to be true because I also washed my hair significantly less during the infusion treatment because of the PICC line and experienced no negative effects. I would have intense under arm itching occasionally too. 

2. Smell/Odor. My bad breath is gone. (My husband might admit to how bad it was if I prod him some more.) My body odor itself is no longer as strong. I could never figure out why I seemed to smell sour after sweating more or showering less. Maybe like three day old beer? (That is so gross I can’t even begin to figure out which emoji is best.) It was unpleasant for me so I have no idea how it was for people around me. But a gradual change in your body odor is not really something you remember to ask the doctor about.

3. Eczema on my feet. A fungal infection on the heels of your feet and around dead skin does not look like a fungal infection on flat skin. I think the yeast was actually worsening eczema on top of causing other issues.

4. Residue. I don’t know what else to call it. The best example is what happened to my underarms. Some time long ago I realized I had this white pasty looking substance under my arms. My under arms were so sensitive I had to stop shaving. I would trim the hair with a simple battery operated trimmer. There continued to be this residue that looked a lot like built up solid antiperspirant/deodorant. I assumed it was a combination of dead skin and deodorant. It was actually reasonable to assume I was allergic to my deodorant.

There’s other parts of my body that has a similar type of “residue” that’ll I skip the details on. Belly button is probably an obvious one. Come to think of it, it was EVEN MY EARS. Basically, if it’s dark and/or moist there was probably a strange white build up if I didn’t shower/clean regularly. I’ve also just realized that I could have the same build up across my skin if I wasn’t able to do something as simple as rub down the length of my arm with a wash cloth in the shower. (Sorry, that’s a horrible sentence.) So, it was everywhere on my skin and if the area was moist (moister?) then it was worse.

I think that’s a good segue for switching to internal, wouldn’t you say? Some of these symptoms I’m not sure how much the yeast overgrowth contributed and how much is from my chronic diseases.

Internal

5. GI symptoms. I have less gas. I’m wondering if removing the inflammation caused by the yeast overgrowth will effectively reduce the severity of symptoms from my gastroparesis.

6. I couldn’t wear tighter clothing – like yoga pants for more than 10-12 hours. Actual leggings which are slightly tighter was even worse. Let me put it this way: chronic vaginal yeast infections do not have the tell tale white … substance. You get “irritation” instead. I put the word irritation in quotes because it seems like an understatement. More time will tell.

7. Sore throat and pain when swallowing. I would wake up in the middle of the night to pee and have a super painful spot in the back of my throat and it would happen again in the morning. I could lose my voice after lots of talking. I think I was drinking more water to compensate for this too. Sore tongue but you couldn’t see it so doctors didn’t believe me. I think I had a layer over my tongue that you couldn’t see without scraping. There was also the sensation of something at the back of my throat or tongue. It’s not something you can easily ignore. (MS can cause problems swallowing, so how was I to know?)

8. A bad taste in my mouth and a weird change to my saliva. I have a suspicion, that might be confirmed with my next dentist appointment next week, that the yeast was interfering so much so that I was at higher risk for cavities. I had all these tiny little cavities 6 months ago and I don’t drink much that’s carbonated, let alone anything like regular soda. The actual consistency to my saliva was also weird and well, wrong. How would you describe it? It was weird.

9. I think maybe my eyes had issues too. It’s weird to consider, hard to describe, and it wasn’t as severe as other parts of my body.

10. My bladder. I already have chronic symptoms because of MS. If I really was drinking more water that wasn’t helping. I might have less inflammation here too, but more time will tell since I was also on prednisone through the infusions.

11. Clearer sinuses and nasal passage. Over the past few months I’ve noticed an increase in crap in my sinuses. Like I was more congested and actually started using sinus wash more. Anyone who uses sinus wash probably understands why this is significant.

12. I should have less systemic inflammation too. This might lead to improvements in my levels of chronic pain and chronic fatigue. Maybe this will help my MCAS be less likely to flare? My migraines had worsened in severity this year, I was experiencing less but they were lasting longer.

13. INCREASED sense of taste. I can remember wondering why some foods seem so bland. I would also search for stronger flavors. The build up of yeast in my mouth was getting between me and my food. As a specific example, there’s a dark chocolate truffle flavored with bergamot among other things that tastes stronger to me. Food might actually be more enjoyable. More time will tell on that one too. Anyone with major food sensitivities and diet restrictions can best appreciate why this improvement is wonderful.

My symptoms had become so widespread and, well, all consuming, that I have realized some things as I’ve written up this blog post. It’s been a crazy experience.

Finding science on the internet about candida overgrowth is almost impossible

Part 1. (edited 8/12/2017 6:30pm CST)J

You could call this post my first attempt at finding information.  It was semi-successful. After finally convincing my immunologist there’s something there, despite no white patches in my mouth; he did a throat culture. Now that I’ve started antifungal infusions I’d love to find some useful* information about fungal overgrowth.

This is one of the better explanations about candida overgrowth that I found from a not academic journal site. And it still has problems. That led me to academic journal searches. What annoys me the most is the utter lack of sources. So there’s no way to know if anything about the food recommendations is accurate. In general, it’s interesting. I didn’t try the ‘spit test’ but I do know my spit is often thick like even when I’m not dehydrated. So, hmmmm. But anyways.

….. I realized after I hit publish I need to point out that I use interesting and possibly credible and definitely questionable sources or sites as ways to get ideas for more research. I’ve been researching for my own benefit for over a decade and only recently decided I’d start sharing some of the things I find since there’s so much out there on the Internet. For example, because of that source I knew to look out for (credible and proven) essential oil usages. …. And now we continue.

I also found an interesting article discussing that dysmotility and PPI use are independent risk factors for bacterial and/or fungal overgrowth. Causes are interesting and helpful to understand – to a point. You reach a point where you want help, not explanations for why.

The other potential I found is a literature review from 2014, and as a general rule, literature reviews are always at least a tiny bit helpful.** That article is behind a pay wall but all the references are available and it’s almost always better to go to the original source. A lot of the references are behind paywalls as well, or very highly specific studies. How about, The epidemiology of hematogenous candidiasis caused by difference Candida species. And then there’s this one, Candida albicans: a review of its history, taxonomy, epidemiology, virulence attributes, and methods of strain differentiation.

The abstract of this article,

“Candidiasis: predisposing factors, prevention, diagnosis and alternative treatment,” mentions: “In the past two decades, it has been observed an abnormal overgrowth in the gastrointestinal, urinary and respiratory tracts, not only in immunocompromised patients, but also related to nosocomial infections and even in healthy individuals. There is a widely variety of causal factors that contribute to yeast infection which means that candidiasis is a good example of a multifactorial syndrome.” I point that out since it mentions gastrointestinal, urinary, and respiratory. Interesting. Wish I could read that one, but again, f’ing paywall. Side note: Need to check the references from it. See? The references are like a reading list.

This article clears up that candida infections can ‘blow up’ into blood stream infections. I know ‘blow up’ is a horrible choice of words. It also uses the words “in certain groups of vulnerable patients…” so this blood stream infection must be super super rare. Here’s another that mentions bloodstream infections. Candida albicans versus non-albicans bloodstream infections: the comparison of risk factors and outcome. (lots of math in that one)

This one has pictures and focuses on specific regions of the body that are infected. (when you hit that link you won’t see pictures, you actually have to keep reading)

And I didn’t know that treatment options for uncomplicated vulvovaginal candidiasis were so controversial. (Or was in 2011.)

This next one I was super excited to find because it’s available! Effects of plant oils on Candida albicans. It’s super short but it’s easy to read and has results. PDF direct link here.

If you understand, or know someone who understands, bacteria biofilms, then this article might be interesting for you. Again, paywall. I got my hopes up since it talked how Candida is affected by salvia and dietary sugars. I’d really like an answer on the sugar thing. A clear, backed by science answer, with details. DETAILS!

I’ve also found information that says I’m at risk for candida infections just because I have MS. Other risk factors include oral birth control and corticosteroids. My thrush got worse after I was on prednisone a few times this year too.

I’m going to try rinsing*** with a few drops of peppermint oil in water before bed, and when my mouth tastes extra foul. Before this I only knew about tea tree oil. Tea tree oil is also foul, but not as horrible as the flavor of candida.

So far the search has been frustrating. It might be helpful to just look for information on fungal overgrowth but then that’s going to run into all the not science information out there about mold exposure.

*useful. Like based in science and cited

**I have a Master of Science in Applied Sociology. I can write an excellent literature review so I know when I spot a bad one. I also learned, in undergrad, how to identify a source as credible. Not everything on the Internet is true, neither is Santa. If I couldn’t successfully judge a source, I would not have graduated with two degrees.

***Don’t swallow. *snicker*

Gastroparesis: Sometimes you know more than your doctor

(American) society still seems to have this thing where doctors are revered and assumed to know this amazing amount of knowledge about things no one else understands (except on tv). It started hundreds of years ago with licensing and membership requirements to be able to restrict people who wanted to be doctors and it still hangs on… even though medical care in this country isn’t as good as other similar countries. Obviously the licensing is important and needs to be required. It offers protection. Not many people understand they must be honest and open with their doctors. Not many people understand that doctors should be willing to respect their patients. Doctors are not omnipotent gods.

All that said, people with chronic illnesses can end up knowing more than their doctors… or anyone they interact with who is a “medical professional”. Yesterday I explained gastroparesis to two different people in a medical field. The first was a dentist… I can completely understand a dentist not knowing about a GI disease but it’s still weird to have to explain. (See above.)

The second person was a dietician. I explained what my GI tests had found and in front of me she turned around to her computer and googled Gastroparesis. She printed out information from one site and then went over it with me. She kept on even after I realized it was a print out I had at home that I’d read through. She ignored the things I said like:

Information on gastroparesis varies between sources.
There’s only so much my doctor can help with because some things I just have to figure out on my own.
I needed lifestyle changes, not just diet changes.
Gastroparesis makes exercises difficult and problems with pain and fatigue make exercise harder.

Mostly she was happy about my weight loss. The weight loss I’d achieved because the gastroparesis limits how many calories I can consume at one sitting/in a day. One she was so happy was because she has to follow FDA guidelines. Guidelines that are for healthy people people not like me… people without chronic diseases that have no cure and aren’t caused by obesity. The only thing the dietician really helped me with yesterday was a little bit more understanding on how to approach monitoring my calorie intake – and how much fat, protein and carbs I need. Now that I think about it the only reason why I want to see her again is to see her response based on my additional weight loss…. I still can’t eat as much as my recommended calorie count for a day, so my weight loss will continue. (Hopefully I won’t add it back on later.)

The medical field in this country needs to change, but because our government’s views on medical care access are based on how much people deserve instead of recognizing that medical care access is a human right, we still have very far to go. This should also include changing the relationship between doctor and patient. People need to learn to advocate for themselves, which isn’t the same as arguing with their doctor that WebMD knows more. We need to learn to value our health and know that sometimes lifestyle changes are necessary.

Control

I don’t have a job and cannot have much income at all for the next three years if I want my mountain of student loans to be discharged for disability. I’m not able to fill my days with volunteering since I’m not working because I do not have the physical or mental energy I once had a few years ago. I also have to be aware of what/who I’m in contact with. If I get sick from a sick person, I could be sick for a very long time.

I have to plan out a lot of my activities – usually everything outside of the house – so that I still have energy for anything afterward. There is very little safe and healthy for me to eat outside of food that has been prepared at home. The one thing I know I can get from any convenience store that is safe for me is potato chips…. except right now while this acid reflux is really bad. My diet is very restricted and there are few food or drink “indulgences” that I get to partake in. In the morning, I usually eat so I can take my medicine, not because I’m hungry.

A few weeks ago I received my (first) denial letter for my SSDI application. (Apparently the DoE can discharge over $110,000 in student loan debt easier than Social Security can give out monthly checks.)

I knit, peruse the internet, or play ithing games, almost every day. I feed the cats. I remember my regular meals but sometimes forget to eat in between those times. I have problems with anxiety and depression, in part because of my health problems and in part because of all the bad experiences I’ve had in medical settings….and in part because I feel like I have very little control. On bad days I do little more than stare at my ithing, watch Netflix, eat and nap. On good days I can handle computer games and more than one or two household chores. Sometimes it’ll be two weeks before I leave the house besides for the grocery store or a doctor appointment. Going to the movies is really hard on my body and brain because of sitting still for so long and mentally processing everything from the movie. I think that must be why I like re-watching movies/tv shows.

When I was a grad student I wanted to make my life into something meaningful. I wanted to be able to help people by working in a non-profit organization. I can’t do that. It’s not possible. Someone/something/the universe/the fates/a higher power/my genes took that away from me. What I live now doesn’t feel very meaningful.

Somehow I need to find a way to focus on the little things I do have control over and one big thing I do have control. I choose to continue to fight to the dark thoughts that tell me it would be easier just to give up and stop it all. Except, that living shouldn’t be a battle.

Looking forward and being sick

Or, why I’ve decided to apply for disability.

My health has improved in the past few months, since it started getting worse(r) at the beginning of the year. Much of my week to week, or month to month, life often seems to be taking two steps forward and one step back. (Or one step forward and two steps back.) It’s depressing and frustrating.

In the last month or so I reached an important milestone. I choose to think of it as a milestone. I stopped looking at how I feel compared to how I felt. (I need to make sure my neurologist understand this.) Instead, I’ve started (trying) to look forward. How do I feel compared to how I should feel to be able to do things like work full time, write a book, work in the yard again, or volunteer again.

Ignoring, for a moment, the unknown aspect of all my multiple health problems, I think it will be years before I can attempt many things in life that I used to take for granted — without much planning, preparation, and expectations of doing nothing but resting before or after. The unknown aspect of my health problems means that I don’t know if I’ll be staying in bed – or going back to bed – tomorrow until tomorrow.

The goal that I put first, after taking care of myself, is being able to write a book AND publish it. This is something I can do on my own schedule, around doctor appointments, migraines, and naps. This is not something that pays bills. If I was to go back to work full time, I’d lose access to doctors because I wouldn’t have the time to get to appointments. I’d also lose access to hobbies and increase my stress. All of these things would negatively affect my health by causing more issues with pain and fatigue – among other things. More pain means (more) narcotics. It would also mean I’m more likely to get sick. Getting sick means more doctor appointments and more medicine.

Regardless of what my long term goals happen to be, I now understand that I have to think in terms of years. Half a year, a whole year, two years, etc. Getting sick happened over years, not weeks or months. It’s going to take longer than that to improve my endurance and find my new normal. I’ll probably never be like how I was in graduate school. (That was only 3-4 years ago!)

This is not something that pays student loans or doctors or medical bills that are in collections. It all sounds scary, but at least I can look forward and think about the future now without panicking (much).

the sick life of a full time patient

If you are not familiar with the idea of the Spoon Theory, developed by a blogger with a chronic disease, but want to know more about how people with chronic disease(s) feel on a daily basis, you can find the explanation here. You can also read on to see why I have problems with this explanation of living with chronic disease. However, tt is important to understand this concept as it was originally presented because I think it’s important to see how the author came up with the idea “on the spot” in a restaurant when she was basically “put on the spot.”

The Spoon Theory is just the tip of the iceberg for people living with chronic disease – especially for people with more than one chronic disease. Chronic disease is often autoimmune, and so it’s not uncommon for someone to have more than one chronic (autoimmune disease).

I identified with this idea of the Spoon Theory when I initially started being diagnosed with chronic illness, such as my fibromyalgia. Initially it seemed to fit. But then I started reading more about my health, understanding more about my health, and over the weeks and months I began to realize it doesn’t always apply. It cannot account for the unpredictability that is life when you have a (seemingly invisible) chronic disease. The Spoon Theory is too black and white. Life isn’t as easy is black and white. Nothing is that clear and concise, except maybe death, taxes, and medical bills. Life is gray, and chronic disease is even grayer than gray. The Spoon Theory even makes living life with chronic disease easier than it actually is.

The main problem with The Spoon Theory is that it does not take into account so many other things that are part of the life of being a full time sick person. I cannot go to the doctor, be given a medicine and expect to feel better in seven to ten days. More than one doctor has told me that he or she will help me, but has no idea how long it will take. First, right now, I am a full time patient. One of the primary reasons I cannot currently work is because I see so many doctors, too often. There’s not enough time to travel to and from appointments, keep my own medical records up to date and organized, pick up new medicines at the pharmacy and work a full time job on top of everything else every single adult person would like to be able to do with his or her life. (What’s a vacation?)

Second, it does not account for the shame and guilt a person with chronic disease, and chronic pain and/or fatigue feels when they have to ask for help from their friend, family member, or care giver – again. I’m lucky; I’m married and my husband is extremely understanding and reliable. He helps me out. I wish I could help him out as much as he helps me out. Also, it does not take into account the anxiety and stress involved in seeing a new doctor either in a new specialty for a new “problem” or having to find a new doctor because a doctor refused you care. Or, the fear of going to the emergency room because something is wrong but you don’t quite know what.

Third, it does not account for the mental fatigue and internal anguish caused by having your identity stripped away or otherwise altered against your will. Once I was a full time graduate student and intern at a local nonprofit organization. I was learning, and helping, hoping to be able to aid people further after I achieved my degree. Now? Sometimes I’m too tired to figure out what to make for lunch, let alone figure out what household chore needs completed next.

Fourth, The Spoon Theory suggests a normal versus abnormal mentality. Everyone has bad days. Everyone knows what it’s like to have a bad night of sleep. Everyone can take a nap and regain some lost energy. The Spoon Theory focuses on physical energy and physical fatigue. The Spoon Theory is useful in explaining how people with chronic disease have reduced energy and increased fatigue. But, beyond that the analogy loses some of its power because of the normal (them) versus abnomal (us) mentality – because it’s explaining how the sick people are different from the health people. Perhaps we should do more than focus on perceived outward differences.

Possibly the biggest problem with the Spoon Theory, is that it does not account for the invisible nature of many chronic diseases and the judgement that someone with reduced physical and or cognitive abilities deals with on a regular basis. I don’t look sick. However, I might act high, confused, or otherwise just “dumb” because of chronic pain, chronic fatigue, or side effects from medicines – including but not limited to pain medicine. I am sick.*

And one more thing, the Spoon Theory does not account for the fact that having one or more chronic diseases and living with chronic pain and or chronic fatigue changes how a person approaches life. It also changes how other people approach you, when you are the sick one.

I think I no longer identify as a spoonie,** at least not primarily. I’m not quite sure what I do identify as right now either. I feel like a full time patient, full time kitty mom (we do have 4 cats after all), a part time knitter, a part time writer, and a part time wife.

I live the sick life. At times the sick life is lonely and scary, full of unknowns and scary monsters. Other times, the sick life is just like, well, life.

 

_____

*I don’t think the word “sick” as it’s defined in the English language is specific enough to cover all aspects of sickness. We need more words.

**spoonie definitions vary depending on who you talk to or where you read.

Being sick sucks when you’re already ill

I think the English language does not have enough words to explain things like sickness, illness, disease, infection, and the difference between chronic and acute. To me being sick is acute, like having an infection. Illness is chronic, like disease. So, when I have a kidney infection that means I’m sick on top of being ill since I have 2 chronic illnesses. (Or 3, does asthma count as a chronic illness?)

Same goes for pain. Acute pain and chronic pain are two entirely different animals too.

I suspect some people also only consider people sick if they are contagious. All of my problems are practically invisible right now.

The worst part? My chronic illnesses cause cognitive problems and being sick saps my energy even more.

I just want to be able to work on one of my writing projects but it’s been so long I can’t remember what I had planned, where I was, or where I was headed. Writers say write every day, well, I’d like to meet a writer with a chronic illness who still writes every day, regardless. Some days I’m lucky I can function.

Drowning

I need to see if I can get some of the crap out of my head. I have two neurologists.

Right now, my medical history includes:*

  • depression**
  • anxiety
  • diverticulosis (asymptomatic)
  • autoimmune problem causing histamine intolerance (case study with an immunologist)
  • regular pollen and dust allergies – except they are more severe than “normal”
  • food allergies
  • food sensitivities – no gluten, no MSG, the list goes on and on
  • asthma
  • migraines
  • fibromyalgia
  • bulging disc in my lumbar – L4/L5 I think

I can now also add:

  • lesions in my brain and cervical spine
  • degenerative disc disease – no idea how bad
  • slight Scoliosis – middle of the back – I guess it’s minor?

In another 4 to 8 weeks I might also be adding multiple sclerosis to this lovely list. Technically, the neurologist’s blood tests and/or lumbar puncture could find other problems. It wouldn’t be the first time. Multiple sclerosis has it’s own list of problems which might explain some of the other constant problems I have which aren’t in the list like:

  • chronic pain
  • chronic fatigue
  • chronic sleep problems
  • cognitive/focus problems
  • muscle pain
  • needing supplements and regular medicines multiple times a day

I know, logically, that I should not feel like I’m drowning. I should not be eaten up by anxiety and depression in varying ways on varying days…. However, it’s hard to find the little things that keep me breathing in among all the other things that are scary. I know I should take care of myself.

I know that technically nothing in my body has changed – except that maybe the pain I experience at different levels every day is a sign of a larger problem. Except, now I know I’m likely to have back pain/problems/issues for the rest of my life.

What’s spending a few more months in discomfort and pain, feeling like your body has betrayed you – when you’ve already spent years feeling that way?

If it’s not multiple sclerosis – which can be treated – I have no idea where I’m going from here.

 

 

*Oh look, this distraught Virgo is making bullet pointed lists.

**I have no thoughts of suicide.

The Eliminating Scary Medical Stuff game

In roughly the last 12 months I have played this game more times than someone should have to do it in their lifetime. Bodies are weird. I’m beginning to think humans never made it out of the beta program. It’s also demonstrated just how horrible health care insurance is in this country….which is scary since having insurance is still better than having none.

Last summer I went through a rheumatologist’s battery of tests and ended up a diagnosis of fibromyalgia. It’s not Lupus! This diagnosis did actually make sense for a number of until then unexplainable symptoms and I reacted to like all or almost all of the fibromyalgia tender points.

Last summer I also went through a cardiologist’s battery of tests. This ended in a “there’s nothing wrong with your heart.” I also found out that red-40 food dye can give me tachycardia bad enough to make a cardiologist nurse insist on doing an EKG.

Last fall, I think, I started to develop a horrible rash that almost nothing would make feel better that I dealt with into the spring. I’m pretty sure now that was from the gluten intolerance I didn’t quite figure out until late spring/early summer.

Then I saw the immunologist to restart my allergy workup. He sent me to a GI doctor to check on those symptoms. The GI doctor performed an endoscopy and colonoscopy and found lots of inflammation and way too many polyps for someone my age. Also tested for celiac and that was negative. He sent me to genetic counseling – I think the genetic counselor or testing center lost my information and I only recently found the paperwork so I can consider calling – which may or may not be the old phone number from before her office moved. (The test takes 12 weeks to complete.) Additional followup and discussion with immunologist led me to try the low histamine diet for histamine intolerance. This diet has improved many symptoms.

I’ve also found out little things, like I’m chronically low on vitamin D and starting the 50,000 IU/week dose of vitamin D improved a number of my symptoms. Doing things like introducing magnesium and CoQ10 have also helped immensely.

Now, I’ve seen a neurologist about my migraines and the MRI of my brain and cervical spine found lesions in my brain and neck. This is a possible sign of multiple sclerosis. (Hey! I spelled it right on the first try!) Today I see another neurologist for an MS workup. I don’t know if this will lead to another set of MRIs this time with contrast, a lumbar puncture, and or anything else.

This makes – between last May and today – less than 12 months technically – 4 times I will have played the game of running through tests with a specialist to make sure I do not have a horrible, scary, or debilitating disease. The only good thing about fibromyalgia is that your body does not deteriorate.

Just once in my life, I’d like my body to be easy and show no signs of a scary disease – or have signs of something that’s simple and easy to fix. Breaking bell curves can be exhausting. I’m taking an academic article about MCAD to the neurologist appointment this afternoon.

*edit for more typos I missed in the first edit.

Writing and Chronic Illness

I have this thing floating around in the back of my head. I’m trying to figure it out and give it some flesh and blood. What if fibromyalgia is what happens in my life that means I finally take the steps to become a full time writer? (Thankfully I have a supportive spouse in this equation.)

It’s weird because while wondering if my chronic illness is going to make it easier for me to change my life I’m also afraid my chronic illness has trapped me and I won’t be able to change my life.

The trick, I think, is to find a place to start. I’ve realized that writing is like mental exercise. I’ve started exercising at 10 minutes every day or every few days. We’ll play it by ear. I can do the same thing with my writing. To start. Blog posts don’t necessarily count.

I also recently read on the internet that on days you cannot write, you read about writing, or think about writing. I’m hoping this book will help too.

In theory, if the CoQ10 I’m now on seems to be helping my fibro fog. Exercise will also help. So, I just have to think about this like it’s a journey. You have to start someplace.